A perspective on life, 3 years post transplant. By both Abby and Michelle

Last Saturday, the 12th, we celebrated Abby's 3-year heart anniversary.  It's hard to believe it has only been 3 years, it feels like a lifetime.  We celebrated the day by paying it forward in honor of Abby's donor.  We still don't have any information on who her donor is, but that's okay.  I've decided that maybe we never will, and that's okay too.  If it's meant to be, it will happen.  For now, we'll just keep thinking about and praying for them and their family.  We are definitely grateful.

For our blog post to celebrate 3 years, we thought it would be a good idea to share what life is really like now, both for me as the mother of a child that has a new heart, and from Abby, a heart transplant recipient.  Our story is probably very different from other transplant kids, every kid is so different and has different ups and downs.  We try very hard not to compare Abby's story to other heart transplant kids, it's like comparing apples to oranges; that being said, this is Abby's life now………

Abby

Hi everyone! It’s been a while since I’ve done a post on here, but my mom and I thought it would be a good idea to tell you guys what our lives are like approximately three years after receiving my heart transplant. So I’m going to start off with a list of some of the bad things that have come out of this trial, then some of the good.

So here we go!

THE BAD

·      Medications and their side effects.

I have to take medicine three times a day. 9 AM, 9 PM, and again sometime

after 11 AM and before 7 PM. I will have to do this every single day for the rest of my life. Now the medication that I take in the middle of the day will supposedly be taken off , but it has been three years of the same dose and I still have to take it.  I take about 11 pills in the morning, 2 in the afternoon, and 9 at night. I know it shouldn’t seem like a big deal, but just knowing that I have to look forward to this every single day for the rest of my life really sucks.  Medicine also gives you really crappy side effects. Just this week we had to go into the doctor because my legs kept falling asleep. We found out it was because my migraine medication was at too high of a dose and had to bring it down. When we change my anti-rejection medication dose, without a doubt I get diarrhea for at least a week while my body gets use to the change. Most of the time when I stand up too fast I get dizzy. My hair is getting thinner because it is falling out. A few of the side effects have stopped now that I'm not on Prednisone. I personally call Prednisone the ‘Devil Drug.’ Let me just name some of the side effects of Prednisone: Weight Gain, Glucose Intolerance, Low White Blood Count (No leaving the house), Bone Thinning, Easy Bruising, Mood Swings, Insomnia, and Acne. Just what every teenage girl wants right? I have to take the ‘Devil Drug’ each time I go in rejection, which can happen at any point throughout my life.  Yay.

·      Friends… or not friends?

At the begging of all this it seemed like everyone wanted to be a part of everything that was going on, and please, don’t get offended by this. I am just telling you what it feels like to be in my shoes.  But now, I have nearly no one (friends) left in my life that are still willing to work through the struggles of my transplant with me.  I have no contact with 90% of the people that were there at the start.  Part of this could be that I had to move away from home for a about 6 months during 7th grade, and that I have not been able to return to school full time, and I am not blaming anyone for this or telling anyone to do otherwise… It just sucks. And going through this I feel like I have matured so much and been around adults most of the time, so that when I do go around my friends it just feels different.  Hopefully going back to school full time in a month will change my perspective on this a little bit.

·      Getting tired

You would expect some fatigue the first couple months after recovering from a heart transplant... but you would not, three years after, still be expecting to go to a day of school and come home and sleep for two hours. Or go to the beach for a couple hours and have to sleep ten hours a night plus sleep on the beach to be happy enough to enjoy the trip. I guess what I’m getting at is the tiredness of the transplant does not go away, it just lessens, and it’s just something you have to learn to deal with.

·      What about the future?

Let’s not sugar coat it; my life is not expected to be as long as any of yours is.  But there’s always that nagging in that back of my mind of how long? Why am I doing all this work to get through high school if I might not even get the chance to finish it? Will I make it to college? Will I ever get married? All these questions can go through my mind as many times as they want to, but the thing is, I will never know. I will not know until it happens, so they are pointless things to think about, and pointless to worry about, and pointless to ask. So I put it in God’s hands, and I go through high school, and I work for college, because what else is there to do?

THE GOOD

    The realization of how important family is

I know we have said this many times in the last three years, but I cannot express this enough. When I had my cardiac arrest we had to move up to Salt Lake away from Brittany and Brock for 5 months. This is one of the hardest trials we have encountered. We are also very close with my grandparents and cousins that live in St. George, during those 5 months we were stripped from seeing them as much as we were used to also. BUT, since we’ve been making frequent trips up to Salt Lake we’ve grown closer to our other families that live up in Salt Lake, and I could not be more grateful for the chance to see them more often and help those relationships to grow.

·      Driving to Salt Lake

My mother is going to kill me for putting this on here, but I truly do like driving up to salt lake every so often. Maybe it’s because I sleep most of the drive, or maybe its because spending four hours in the car with a person you love while listening to good music isn’t so bad after all.

·      Primary Children’s Medical Center

Oh goodness where do I even begin? The house on the hill, our second home.  So many friendships have started there. I could tell you all the memories I have from Primary Children’s, I could go on and on for hours and hours on how that hospital has made the darkest years of my family’s life just that much better. I could tell you all the miracles that that hospital has performed for me. But why would I right now, in this short paragraph, when my whole life is possible because of the work Primary Children’s has been able to do for me? It’s because of their staff that I am here, sitting on my couch. The doctors we see at clinic have put more hours into making me healthy than I can imagine. I just cannot even put into words how much thankfulness and awe I have for what this hospital has done for me the last three years. I could not ask for a better place to get taken care of. Thank you doctors, nurses, and patients that I have grown close to because of Primary Children’s. I could not have done it without you.

·      Having new experiences

Now these experiences aren’t always good, they may include learning what it feels like to have a PICC line put in with no sedation, or getting shots everyday for two weeks by your family members, but still, necessary nonetheless.  The experiences that come out of having a heart transplant will be like no other experience any other person could ever have. From holding my own heart, to meeting other heart kids, speaking at Primary Children’s fundraisers, even seeing my new heart on the echocardiogram machine. There are so many things that are just simply breathtaking that I get to do and be apart of now.

When I had my cardiac arrest, my heart stopped for 15 minutes. Many of you know what happened in that time period, and if you don’t, click here http://Abby's near death experience That experience alone makes everything I have gone through and everything I will go through for the rest of my life worth it. No matter what happens throughout my life, I know that what I saw and what I heard that night in the hospital was real. And that’s all that really matters.

So for the most part I am a pretty average 15 year old girl. In fact, when my mom told me about her idea for this blog post I thought it was a really stupid idea because I'm just normal,  but after nagging me for a month and a half I decided to do it. We have our ups and downs, but in the end if I had the choice to go back and change what happened on May 18th, I would not. Too many blessings have come out of this trial. 

Michelle

For the most part, day-to-day life with Abby is very similar to any kid.  She still has to take her rejection meds, and some others two times a day, exactly 12 hours apart.  Abby is still on quite a few medications, but they're totally helping her.  We've finally found a medication that helps with her migraines, so that's awesome!  I spend lots of time making sure that she has all of her medications ordered on time and that they're ready for her to take each day.  She could probably do this on her own, but I don't think she's quite ready for that.  I deal with many prescriptions and 2 different pharmacies and they all need to be refilled at different times.  It's time consuming, but just part of her life now.  I'm impressed with Abby because she has never missed a dose and is rarely late.  Which is good, because once I heard that if she stopped taking her meds, she would only survive for about 3-5 days.  Not good.  She will be taking the majority of these medications of the rest of her life.

As far as appointments go, if everything is looking good, and Abby is feeling good, she only has to go to clinic at Primary Children's every 3 months and she has a biopsy once a year to make sure that she's not in rejections and to look at her arteries.  Not too bad, we can do that!  She usually ends up seeing her pediatrician in between those times for different reasons though.  Her next clinic is on August 3rd, right before we go back to school.

Abby only has a few restrictions.  She's shouldn't swim in pools that aren't kept up very well and hot tubes are a big no!  Lakes are questionable as well.  She can eat most foods, but no grapefruit or pomegranate.  We're pretty careful about restaurants we'll eat at, and buffets aren't' the best idea.  She can travel wherever she wants, but she struggles with elevation.  For some reason, probably because of her pulmonary hypertension, when we're in higher elevations she has a hard time catching her breath and it exhausts her, so we don't go up very often. She feels great at sea level, so trips to the beach are always a bonus (I love this too!!!)  For the most part, she just a normal kid!  School has been a little bit of a challenge for Abby.  Last year, she did a lot of her classes online because she was missing so much  school the year before because she got sick a lot.  This year, she's going to try to go back to school full time.  I'm so happy about this, I think she really missed the social life.  That's so important especially now that she's going to be in high school.  I'm praying so hard that things will work out for her this year so that she can stay in school with her friends!  She's still pulling A's and B's, but it's harder for her now than it was before her transplant.  It's probably harder now because she missed a lot of her 7th and 8th grade years, but after doing some neurological testing, we found that some parts of her brain were affected a little bit when she was having CPR for 15 minutes, as well as when she was on bypass.  But, it's nothing too serious.  She has some strategies now that help with her memory, learning, and focus.  Abby works hard in school and is very determined to be successful.  When she graduates from high school she's planning on going to college and eventually become a psychiatrist or counselor of some kind.  But, who knows, she's still pretty young to make these decisions.  Like I said, she's just a normal kid.  Yes, she has a lot on her plate and lots of things to think about and worry about that most kids her age never even think about, but she's adapting and handling things very well.  She is definitely amazing in every way.  I look to her and her strength daily, she's very inspiring to everyone that knows her.

As her mom, I've learned to deal with a lot of the stress that comes with having a medically fragile child.  I know that a heart transplant is not a fix, it's just changing one set of problems for another, but Abby is alive and thriving, and for that I'm so grateful.  There are some facts about heart transplants that are always in the back of my mind.

Approximately 80 percent of heart transplant recipients survive the first two years post-transplant, according to the National Institutes of Health (NIH). Long-term rates are generally lower, but are still encouraging. About 70 percent of patients reach the five year mark after a heart transplant and 50 percent live for 10 years or more with a donor heart.  The average is 10 years, but we personally have a friend that has lived over 20 years with her first heart.  We also know kids that are already on their 2nd heart and it's been less than 5 years.  Not knowing is hard.  We just don't know what to expect.  There's a good chance that Abby will need a new kidney someday as well as another heart, her medications are just too tough on them.  But these are all things that we're not going to focus on.  The best thing we can do and that we try to do is to live day-by-day and remember that every day is a gift.  

Some things are harder than others, like on Mother's Day when Abby said to me, "Probably some day, this day will be really hard because I can't have kids of my own."  This is true, Abby can't have kids.  Not only because the anti-rejection medications she's on can cause multiple birth defects, but also because she has a 50% chance of passing on her cardiomyopathy.  This is a hard things for both Abby and me, but we'll worry about it when the time comes.  Who knows how things will change before then. Another hard thing is that I also still like to have my kids close by and I often worry about getting the call that something has happened to one of them.  I think that this is one reason it's been extra hard for me to have Brock in Florida on his mission.  I worry, a lot, that I'm going to get a phone call that he's been in some kind of an accident there.  I think that this is probably a common problem with anyone that has received a phone call similar to the one I did on May 18th, 2011.  That worry is real and it's always there.

Overall, I've learned to have faith that things will happen as they should.  It doesn't do me a whole lot of good to worry or fret, because things are going to happen anyway.  We have learned to expect to have problems along the way, that's what happens when you have a new heart.  There are going to be many highs and many lows, we just have to take them as they come along and roll with them.  This made me laugh while writing it because it's easy to say this now because we're on a high, things have been good and stable for a while now.  Hopefully, I can remember this when one of the those lows hit too.  We are grateful that Abby is doing so well right now, but we know not to expect it to always be this way, and we're good with that.  That's a life we can handle.  So we'll take advantage of these good days as much as we possibly can!!!

Abby's 3rd annual biopsy and other Doman happenings

Our first couple weeks of summer vacation have definitely been eventful, never a dull moment at the Doman house!  Let's start by talking about Abby's annual biopsy she had last Thursday.

It was a long day, to say the least.  We checked in at 6:00 am and didn't finish until 4:30 that afternoon. Good thing we had Britt there to share in the fun!  The 1 1/2 to 2 hour wait while Abby is in the cath lab is so stressful.  I just sit there praying the pager doesn't go off early, but doesn't go off late either.

Luckily, it was exactly on time.  When the pager went off, we walked down and met the doctor in an office by the cath lab and they showed us and discussed the video of Abby's beautiful coronary arteries!  And they did look perfect, much better than my dad's which we were "lucky" enough to see only 2 days earlier (more on this later.)  We also talked about the pressures in heart, which also were perfect.  After that, I always seem to relax a little bit, but then the waiting begins.  It's up to recovery for a 6 hour, lying flat and not moving recovery.  For some reason Abby had a really hard time with the anesthesia this time.  When we first got into recovery, she was having a hard time breathing and she felt really crummy.  This lasted for 3 days.  3 days of aching, feeling exhausted, and overall feeling crappy. I don't know why it was so hard this time, but it wasn't a great day.  Abby was grouchy too, and she's never grouchy.  During her recovery, we met with the transplant team to go over her results as well.  They weren't exactly what we wanted, but they could be worse too.  It seems like everything with Abby is "borderline" right now.  First, her kidney's aren't doing the greatest.  This has been on and off all year, so it's finally gotten to the point where it's time to see a nephrologist.  We've scheduled an appointment, here in St. George, for this Thursday.  Abby had to have labs and an ultrasound today and then we'll see what they want to do from here.  Abby is also in mild rejection.  For those of you that know the scale, she's a  C 2.5.  This is a level that they sometimes treat, but not always.  They've chosen not to treat it for now.  They took 4 pieces of her heart, and only one of them showed any inflammation, so that's why they're not too worried.  We just need to watch for any other signs rejection.  Her blood counts were also all borderline being too low, especially her ANC, so this is just something we're going to watch.  The last thing is that at her last clinic visit, they decided to take her off of one of her medications because she was having some uncomfortable side effects.  This medication is used to lower her lipids and her cholesterol.  Since she hasn't been taking it, her lipid count was way too high.  Rather than putting her back on the medication, we're going to try to take of it by putting her on a strict diet first.  Hopefully that will do the trick.  Other than those things, everything looked great.  After our 6 hours was up, we headed down to get an echo and an EKG, which both looked fabulous as well.  Her heart and arteries did look good which is so important.  Overall, we feel like things could be much worse, but they could be better too.  We're hoping everything will take a turn for the better here very soon.

We've had lots of other things going on top of Abby's biopsy.  Last Monday, Memorial Day, my dad had another heart attack.  Thankfully, he called an ambulance. They took him into the cath lab the next day and he ended up getting a couple of stents put in.  He's home, on lots of new medications, and recovering now.  It doesn't seem very fair, he only had his bypass a year and a half ago.  He was supposed to be good for 5 years, but I guess that would be too boring.  It hasn't stopped him from kicking our butts at hearts on a regular basis.  I am a little mad though, when he called to tell us he had called an ambulance, we were in the middle of my greatest bowling game ever and we had to leave in the middle of the game.  I will probably never be able to top that amazing score either.  We're just thankful that he's okay.

We've also been busy with Brock's graduation and getting him ready for his mission.  It's different with Brock graduating.  Britt didn't really like high school, she was so ready to move on, but Brock loved high school and so it made it a little sad.  He's got such great friends that are all going in so many different directions.  It's hard to even imagine my house with Brock and his friends there.  It's going to be lonely.

Brock with my parents

Great group of boys that I'm going to miss so much!

And finally, we've been getting Brock ready to leave on his mission to Orlando.  This has all happened so fast. From the time Brock decided he wanted to go on a mission, until the day he's leaving is only about 8 weeks!  He got his call so fast, then we only had 6 weeks to prepare for him to leave!  Let's just say that there's a lot to get done in a very short period of time.  It's probably better that way so that I don't have too much time to think about it.  Brock goes to the temple on June 7th, his farewell is on Father's Day, June 15th at 9:00, and he leaves on June 18th.  So fast.  I'm so sad, but I'm so proud as well.  Here's some of our favorite missionary pictures that my dad took last week.

He's looking so good and ready!  It makes it easier on me to know that he's so excited to go.  To say that my last 6 weeks have been crazy, is probably the understatement of the year, but I'm hanging in there.  I think after Brock leaves on the 18th, I'll be ready for some extremely relaxing down time.  But, for now, we'll just keep plugging away.

So, what's going on with Abby?

First of all, our trip to Hawaii during spring break was awesome of course!  We love it there, the beach never gets old!  It's always good to spend some time as a family, this is going to get harder and harder to do the next few years with Brock and Britt getting older.  We were able to spend time with friends while we were there as well, in fact, both Brock and Britt went on dates with some friends from home!  Mostly we just hung out having fun.  One really great thing, Abby's legs and feet didn't swell up at all on the flight!  I'm so grateful that we got that problem taken care of.  A couple of really weird things happened with Abby while we were there were that:  we did a really good job keeping sunscreen on her, she didn't even turn red at all, but the third day we were there, she broke out in little blisters all along her chin and her mouth.  It was very painful.  The other weird thing is that after the second day, she had a very strong sensitivity to sun, so much that just walking from the car to the beach in the direct sunlight would physically hurt her.  It was so strange.  She had never had anything like this before, not even when we went to Hawaii last June.  It really stunk because for the rest of the trip she would either have to be in the shade, or in the water, or else she hurt, a lot.  We still haven't figured that one out.  For the most part, we loved our trip and can't wait to go back!

hanging out at Laie point.  I love how happy we all are!

Spending time at the Laie temple

This is one of the beaches right by our house

It was when we got home that Abby started feeling sick, and now, 4 weeks later, she still feels crappy.  She's had a lot of GI issues, stomach cramping, throwing up, diarrhea as well as migraines and she's been exhausted, lots and lots of naps.  The other problem she's having is that her arms and legs keep falling asleep, this would happen 3-5 times every day! The first couple of weeks we thought she just had a virus, and we were just waiting it out.  Then things didn't change, so we talked to the transplant team and they suggested we see our pediatrician and have some labs done.  So we did, and the lab results came back negative.  We thought she had CMV again, and one of the lab results for CMV came back positive, but when we retested, it was negative.  She continued to feel awful, for 4 weeks, some days worse than others, so that's when the transplant team decided they needed to see her to make sure that her heart was okay and to rule rejection and to figure out what's going on!  We went up to Primary Children's on Monday.  Thankfully, the echo and ekg looked perfect, so that ruled out any issues with her heart.  Her blood pressure has been running a little high, so they're changing the dose on that, and they're taking her off one of her medications that after taking for a while can cause numbness in the arms and legs.  Hopefully this will fix that problem.  Because Abby has been having frequent migraines and headaches, we're scheduled to see a neurologist when we go back up the end of May for Abby's annual biopsy.  Hopefully they'll be able to help with this.  Right now we are still waiting for her lab results.  I think it's her eosinophilic colitis again, she had this back in April a couple of years ago.  Here's the link to that post 2 years ago: http://abbyninja.blogspot.com/2012/05/abbys-annual-biopsy-and-eosinophilc.html    They've also talked about her possibly having an autoimmune disorder, if that's the case, we'll deal with that too.  We're almost to the point that we don't even care what it is, we just want to know so that we can help her start feeling better.  Hopefully we'll hear later today and we can start a new plan!

One good thing that has been going on at our house that has definitely made us happy is our new puppy Murphy.  We new that our old shih tzu Rebel was sick and getting sicker and that he wasn't going to make it much longer, so I started looking for a new dog.  Murphy is our new English Cream Golden Retriever and he is the perfect puppy.  He is so stinking cute and hilarious.  We miss Rebel, but we now have our little shih tzu Marli, and our new Golden, Murphy. Murphy is going to be big, we're thinking around 60 pounds.  So far, he's the perfect dog, let's hope it stays that way.

The last exciting thing that is happening at our house is that Brock has decided to go on his mission before playing football at Weber State.  His coaches told him that he should get his papers done and in as soon as possible so that he'll be back for spring ball in 2 years, so Brock and I sat down and filled out all of his papers and submitted them all last Saturday. I think we probably set a new record for fastest time ever!  He thinks he could get his call as soon as next week and that he'll leave the first part of June.  I have mixed emotions about all of this.  Brock will be an excellent missionary, I've always known this, but I don't like to think about not seeing him for 2 years, that's too hard.  With Britt being in nursing school starting in August and being gone all day, and Brock on his mission, I'm going to be lonely!  I guess it's time, but it doesn't make it any easier. For some reason, Brock's thinking he's going to England, I'm thinking South America....but we'll probably both be wrong!

For right now, we just want Abby to start feeling better!  Hopefully they'll find something today that is easy to fix and she can get back to feeling good right away.  A month is a long time to feel sick and not to be able to go to school or anything.  Lots happening, but summer is just around the corner!

Clinic Day!!!

     Clinic day today.  We had to postpone it last week because somehow, even though I got my flu shot, I still ended up with h1n1.  So after two weeks of being sick and missing school, I was finally feeling well enough to get Abby up there.  I do have to say that I'm pretty impressed that Abby didn't catch the flu, we are feeling pretty good about that.  As soon as I was diagnosed, Abby and I both started on Tamiflu and then I went and stayed at my parents for a week to keep Abby safe, I think it worked....so far, so good.  Thank you to everyone that brought my kids dinner while I was staying at my parent's house, they were well taken care of! Even though it's been two weeks, I still don't have a voice, but I'm back to work anyway.  Hopefully it will continue to get better.

     Now for clinic day.  When we first walked in, we were grabbed by a lady that wanted to know if we'd be interested in participating in a study they were doing on finding another genetic link to cardiomyopathy.  Of course we said yes, we will always do anything that could potentially help determine the cause of cardiomyopathy.  Brock was with us, which they loved because they wanted siblings of the carrier as well.  So, all 3 of us had a lab draw today.  Brock thought it was sweet because after they took our blood, they gave us each a $25 Visa gift card.  Good day for Brock to come to clinic!  Abby had her echo and then we talked to the transplant team.  The good news is that her heart is  as beautiful as ever, no problems whatsoever.  The not so good news is that her kidneys are not functioning in the normal range, her creatinine is too high.  This is the 3rd time this year that her level has been a too high, and because of that, Abby's going to have to start seeing a pediatric kidney doctor.  We knew this eventually could be a problem, her anti-rejection meds are just so toxic and bad for the kidneys, but I didn't think we'd be dealing with it this soon.  Hopefully, we can do some things now that will save her kidneys for as long as possible. We'll see what the doc says after our first visit.  The other good news is that ever since Abby went off of her med, Amlodopine, about 6 weeks ago, she hasn't had any swelling in her feet and legs, not even once!  I think we finally figured that problem out and it is taken care of now!  Thank goodness, because that was not good. Abby's next clinic visit will be the end of May when we do her annual biopsy again, until then, she just needs to stay healthy, especially through March and our trip to Hawaii!  Also, in May, Abby's going to have some neurological testing done.  Ever since Abby's collapse, when she was not breathing or alive for 15 minutes, she's had some memory problems, and we're starting to see it more and more.  We're going to try and find some things that we can do to help her, school can be frustrating for her sometimes.  Dr. Molina told us today that this is a quite common problem with people that have suffered a cardiac arrest like Abby.  Even though we can't "fix" the problem, we can discover what the best ways are for Abby to learn and store new information.  It just might not be the same as the rest of us.  Abby's excited for this, it should be helpful.  Although clinic wasn't perfect, it was okay.  We know better than to expect perfection anymore.

As for the other two Doman kids.....Britt has her nursing test next week and she has her nursing school application complete and ready to submit.  Then it will be a waiting game.  If she gets in her first attempt, it will be awesome.  But, if she doesn't, that's alright too, she'll just have to decide what her next move is.  She's definitely put the work in!  And Brock, after going through the exciting, yet frustrating recruiting process, has signed to play football for Weber State next year.  It's a little farther away than I wanted him to go, but he is so excited, and I feel like it's going to be a good thing for him.  We spent some time yesterday with the coaches and looking around at the campus.  The coaches that we did meet were great, I know they'll be good to Brock.  I felt a lot more confident about things after talking to them.  It was not an easy decision for Brock, but we both feel like he made the right choice. He's still debating whether or not he'll go on a mission this summer, but I think that right now he's leaning towards going to school for a while first.  Hopefully, he won't be criticized for this choice.  The decision isn't always as cut and dry and some people think, not every kid is the same.  Brock will need support with whatever he chooses to do right now, and I have complete confidence in the choices he makes, he knows what he's doing.  Anyone that knows Brock knows that he's got his head on straight and he's mature enough to do what's best at this time in his life.

Lots of fun and exciting things are going to be happening around here in the next few months, I need to get myself ready for some changes to take place. that's not always easy, I kind of like things how they are right now.  Going through the past 2 years with Abby has made me appreciate the little, easy things and life as it is, I think it will be hard for me to give some of those things up.

Brock visiting the coaches and campus yesterday

Signing his letter of intent to play for Weber State

Best friends forever!  It will be sad to see them all go their different ways next year!

The shadows are bad, it looks like Britt has a disease, but the faces are cute!!  I love these kids!

Reflections and Predictions

2013.....One thing I can say is that it was definitely easier than 2011 and 2012!  Things settled down for us a little bit this last year and we were able to start finding our new "normal."  That doesn't mean that we are normal in any way, we're definitely not, but we've found a place that can seem normal, for right now anyway.

Things I learned in 2013:

Sometimes when you think you have a new boy puppy named Milo, you really have a new girl puppy named Marli.

There's nothing sweeter than seeing one of your kids succeed at something they've worked so hard at and care so much about.  Watching Brock's reaction to winning the state championship was something I'll never forget.  Pure joy.

Sometimes, when you've taken on too much, it's okay to say no or to give something up.  I had to do this recently and it wasn't easy.  I was feeling too overloaded and like I was drowning, something had to go.   I backed out of something I was supposed to do.  I felt guilty for a long time, but I know it needed to be done, it was the right choice.  I'm okay with it now, I think that sometimes you need to say enough is enough.

People are weird.  Okay, I already knew this, but I relearned it this past year.  Some of the people that were the most involved and concerned with Abby during her transplant, are the same people that now never ask me about how she's doing, her name is rarely brought up; But some of the people that stayed in the background when things were crazy are now the ones that are the most concerned with her and continue to ask about her and how she's feeling.  It's strange.  This isn't true for everybody, just a few.  I  haven't been able to figure it out yet.  I don't think it's because they don't care or don't want to know,  but I'm not sure why.  Like I said, people are weird.

Never count on anything.  A month ago, we were pretty sure that Brock was going to be playing football on a scholarship at SUU next year.  The coaches had even asked him if there was anyway he could graduate early and come up to play spring ball with them.  But, a couple of weeks ago, 3 of the coaches, including the one that had been recruiting Brock, left SUU and went to Weber.  Now things are up in the air again.  We'll just have to wait and see how things play out.  I think that signing day is the first week in February.  It will be so nice to have things settled and not worry about it.  We are lucky though, if nothing else works out, Brock can always play at Dixie State, they've been interested in him and in contact with him for a long time.  I'm sure that things will work out just as they should.

You can't lose weight with just good intentions, dang it.  I wanted to get back in shape and work hard, I wanted to really badly, but it didn't happen.  I guess I have to act on those good intentions.

Abby and holidays don't mix.  She was sick on Christmas this year too.  For some reason, Abby is always sick on holidays.  It breaks my heart, it really stinks.

I love it when my family is all home and together at the same time.  I know these days are numbered, my kids are getting old and are going to be doing other things soon, but for now I'll just enjoy it as much as possible.

There's no better, more peaceful and relaxing place, then the beach in Hawaii.  I love it there, it's heaven for me.  I wish I could live there.

It's really hard not to properly be able to say thank you for a gift.  Especially a gift that saved the life of your child.  We hope and pray that someday, we'll be able to meet Abby's donor family to let them know how grateful for we are for the decision that they made back on July 12th, 2011.  Without them deciding to donate their loved one's heart, Abby might not be with us today.  I just want to thank them in person.  Maybe it will happen this year.

Probably the most important thing that I learned in 2013 is that I can survive anything and come out okay.  We had 2 really hard years, really hard and I'm still here and I'm doing well. It didn't beat me, in fact, I'm better for what we went through.  I'm stronger than I thought.

Shell's 2014 Predictions (I'm sure that some of them will be way off, but I'm going to try anyway):

Britt will apply to and get into nursing school at Dixie State.  She'll be applying soon, keep your fingers crossed for her, she deserves it.

Brock will be playing football at SUU on a full-ride scholarship.

Abby will be a sophomore at Desert Hills and will pass the driving test and get her learner's permit in May.  Scary, I know.

I will get in shape and lose weight.  I'll get back on my bike and back in the pool.  This is the year that I have time to take care of myself again.

Abby will have a hospital stay.  I'm not being negative, I've just been feeling it.  Hopefully, this is the one that I'm wrong about!

I'll still be in medical debt!  Ha!  I can predict this for a long time :)

We will have trials, I don't expect things to be easy, but we'll be okay next December 31st too.

There you go, my predictions.  I actually am not a real fan of New Year's.  It just means that the gym is going to be crowded for a couple weeks, but it is a good time to reflect and refocus.  I know that most people look forward to adventure and excitement, but I'm looking forward to peace and normalcy, that's what I'm hoping that our new year brings.  I've heard people say that for the new year they choose one word to focus on and to live by, a one-word resolution.  My word for 2014 is contentment.  "The acknowledgement and satisfaction of reaching capacity,"  "A source of satisfaction," "ease of mind." I want to be content with where we are today and where I am at the end of this year.  I want to be content with the decisions that I'm making.  I want to have a life full of contentment in 2014.  What's your one-word resolution?

Crappy Halloween, clinic, changes in meds, and a championship!!!

     My last post was on October 14th, since then, we've had lots of ups and downs around here!  I can't believe that I didn't even post about Abby's clinic either, but I've been busy just trying to keep up.

Things started out great in October, and then, in a typical Abby and October manner,  she got sick, really sick.  She was feeling awful.  So crappy that we ended up calling the transplant team and getting her in to see our pediatrician.  Abby wouldn't eat or drink anything and she was feeling so tired, she was sleeping all day long.  She ended up going in to the hospital twice to get fluids and lab draws to find out what was wrong.  The first time was a fiasco!  The nurse tried 4 times to get blood and didn't have any luck, so she had to call up backup to help her.  It wouldn't have been so bad, but Abby also had a serious migraine at the time.  The one funny thing that happened, was that after about 45 minutes of the nurse poking and searching for blood and Abby crying, Britt called to talk to Abby to try to make her feel better.  Abby was too upset to even talk to her, so Britt said to put her on speaker phone.  Then she said, out loud so everyone in the room could hear her, including the nurse, "Abby, just because you have an idiot nurse, doesn't mean you have to be a butthole!"  Yep, out loud for everyone to hear, it was awesome.  I hurried and turned the phone off speakerphone.  I got a good laugh out of it, Abby not so much, and I think that Britt was just embarrassed...and the nurse didn't know what to say!  A few days later it was back for more fluids, this time we tried the ER and we had a lot more luck.  The bad thing was that it was on Halloween....Abby's 3rd year in a row being in the hospital on Halloween.  What a bummer!  Thankfully the labs all came back negative and after almost 2 weeks Abby started feeling better.  I guess it was just a nasty virus and she has been feeling better since then.

Right after Abby got feeling better, she had clinic.  We went 10 weeks without a clinic visit!  The transplant team told us that her heart, as well as everything else, looked perfect and that we wouldn't have to go back for another 3 months, that was good news!  We made it into a fun weekend while we were there.  We celebrated by going shopping and out to lunch with Abby's transplant friend Miabella and her mom. It's always fun to see our friends from up north!  Then we got to watch Brock win his quarterfinal football game, and I was able to spend some much needed, quality time with some good friends as well.  All in all it was a good weekend.

But, to keep us on our toes, about a week and a half ago, Abby started getting the swelling and redness that's usually in her legs and feet, in her arms too.  One day, it was even in her cheeks.  This is something that has been hard for Abby since transplant.  Sometimes we think that it's something that she can just live with if necessary, but then it flares up and we think that we need to figure out what's causing it, this was one of those times.  We heard from some other transplant recipients that it could possible be from one of her blood pressure medications, so I called the transplant team to see if we could make some changes to see if we could finally get to the bottom of this.  They have always been extremely reluctant to make any changes to Abby's meds because every time they've made a change, it throws everything off.  But after talking to the doctors, they came up with a plan, this was just last Wednesday.  The plan was for one week, to lower her dose of Amlodopine, which regulates her blood pressure, but also helps with her pulmonary hypertension, that's why they didn't want to take her completely off of it.  We have been tracking her blood pressure, morning and night during this time to make sure that it doesn't raise too much.  They really didn't think that this would help her swelling, but it was worth a try.  The funny thing is that since Wednesday, her swelling has actually been worse, not better!  She had to leave school early on Thursday, and she had major problems yesterday after our drive up north too.  I'm supposed to call again on Wednesday and let them know how things go.  If we don't see an improvement, we're going to be referred to a vascular specialist to see if that's where the problem is.  If they can't figure out, we're going to keep searching.  Something is causing this, and for some reason it seems to be getting worse.  I don't think it's something that Abby can just live with anymore.  We've got to figure it out and do whatever is necessary to fix it.  Thankfully her blood pressure has remained steady even going half off of one of her meds.  I just feel good that we are finally trying to do something about it!  I will keep you posted, but I have a feeling we'll be making a trip up north this month to see another group of doctors.

.......and now to the "up" part of our past month.  We've spent the last 3 weeks traveling up north every weekend to watch Brock and the Thunder play football!  They just kept winning, and last night they won the state championship!  I've never seen Brock happier than he was last night after the game.  He couldn't stop smiling and crying and yelling and hugging everyone, it was just too awesome.  I know that many of you have already seen the pictures and read the Facebook posts, but I have to put it in our blog too for when I print up our blog book again.  It's our family record of what's going on.  The game last night came down to the last second.  It was the perfect ending to a sweet high school career.

Brock had an incredible season this year, he played really well.  Brock loves football, he loves to work hard, and he loves the game.  He's been very blessed to play for Desert Hills, he's played at Rice Eccles each year since he was a sophomore, finally, this year, they took home the trophy.  The senior class that he plays with is full of talent and good kids as well.  The coaches are amazing.  They've always been good to Brock both on and off the field.  I've always been grateful for the coaches in Brock's life because his dad doesn't want to be a part of his life.  It's good for him to have some positive role models to look up too.  Brock is also lucky because he has the shape and size of a football player, but he also has the desire and motivation, he knows how to work.  It isn't official yet, but there's a pretty good chance that he'll be playing football for SUU next year, we'll just have to see how things play out from here.

Brock and Coach Franke, I love how happy they both look!

Britt.....nice earmuffs!

The captains heading out for the coin toss.

Brock and some of the greatest kids ever!  It will be hard to see all of these boys head their separate ways after this year, I hope they'll remain friends forever.

This is the crew at the semi-final game, it was much colder at the championship.

Abby and  Britt with their Thunder gear and ready to go!

The Game!

Brock after the semi-final game, already looking forward to the state championship.

Crazy, but proud mom at the game!!!  I will truly miss watching Brock play high school football, I think I love it as much as he does!

It's been quite the month at my house.  I always think that things will settle down, but I'm starting to realize that they never will.  I feel stretched pretty thin most of the time, but mostly I'm just so thankful for where we are today.  I've been blessed with the greatest kids, they're amazing in every way, what more could I ask for??  I'm the luckiest and most blessed mom ever!